Archive | September, 2013

Autism: Not actually worse than death

22 Sep

So I was reading about a measles outbreak caused by parents choosing not to vaccinate, and how kids have died of it and it made me so, so sad. Sad for those parents, sad for those kids, sad for the medical community that has not done a good job countering the message of that long-disproven study and Jenny McCarthy.

So, OK, here are my unpopular thoughts on the subject of vaccines.

When I tell people that my daughter has autism, I get all kinds of questions, and I think that’s fine. I appreciate curiosity, and I am happy to try to educate people as to the realities of living with a child with autism. A common question is, “Is she pretty high-functioning?” (They are expecting me to tell them that she is, but in fact she isn’t, so I answer, “No.”) Another is, “Have you tried the gluten free casein free diet?” (No. Her diet is really limited as it is, and so, yogurt is one of her main protein sources for now, so, no. Not now.)

But one that really irks me is, “Did you vaccinate her?”

OK, first of all, I find it kind of shocking that anyone even has the gall to ask me that. I mean, why don’t they just come out and say, “But it’s your fault, right?” Because they want to believe that autism is controllable and preventable. Like if I were running down the street in a miniskirt and a tight t-shirt that said, “rape me,” and then someone did, well, that would be my fault, and if I hadn’t done those things that made me so rapable I wouldn’t have gotten raped, right?

Yeah, no.

But the other thing that galls me about that question is how ubiquitous the idea that vaccines cause autism in the general, non-hippie population. Putting aside the science for a minute, because I will leave that to smrter people than I, let’s just say, for giggles, that vaccines DO cause autism in some kids who are predisposed to get it (even though it doesn’t.) Let’s say it was scientifically proven that the MMR vaccine DOES cause autism (even though it doesn’t.) Even though this has been tested and tested again and there is absolutely no evidence at all that vaccines cause autism, let’s say, for now, that sometimes. Let’s say, in a really low percentage of cases, like 1% of cases, the MMR vaccine causes autism, even though it doesn’t.

Are you with me?

You know what not getting vaccinated can cause? Death. It can cause death. Google measels. Google mumps. Google rubella. Those are the diseases the MMR vaccine is meant to prevent. Since 2007, over 1,000 people have died of preventable diseases, diseases that vaccines would have prevented.

My life is no picnic. I’m sure your life is no picnic either. When my daughter was tiny, she was very, very ill for a long time. I have done my time with sick kids. I have sat helplessly and held her hand while machines breathed for her. I have consulted with oncologists, filled out paperwork to put my daughter on the waiting list for a new liver, and I have stared down the dark hole that is life without her. And in those dark days, if you had said to me, “She’ll live but she’ll have autism,” I’d have cried with joy. Really. Compared with death, autism is nothing.

My daughter does not have an easy life. When she has a cold, the sensation of moisture on her face is so distressing to her because of her sensory issues that she can barely function and she gets so, so sad. She is almost seven and is just now learning to eat solid foods. She sings all day, and tunes out the world, and it is hard to focus on school. Sometimes she is so busy tuning out that she forgets to go to the bathroom, and she poops on the floor (In fact, that was happening as I typed that sentence and I had to put the computer down and go assist on the potty and clean up.) And things that come naturally to my probably neurotypical son are a struggle for her. It makes me sad for her that she doesn’t have it easy. (He can recite parts of the alphabet already!! What the what?!)

But there are also moments of pure joy. When she does something new. When she works hard at something and gets it. A few weeks ago, we went to my mother’s synagogue, and the cantor played some upbeat happy music. My daughter was shaking in her chair and when I told her she could go dance, she leaped up and danced her heart out. She was so happy, and so unselfconscious. I wouldn’t trade her for any neurotypical kid. I felt so proud then, my beautiful daughter, dancing the dance in her heart. I think every parent experiences those moments of pure joy.

I do not consider my daughter’s life a fate worse than death, and even if vaccines DID cause autism, I’d still vaccinate her. Knowing what my life is, knowing what her life is, knowing what we go through, I still vaccinated my son. And even though I don’t believe vaccines cause autism, there was still that moment of doubt, that moment of “what if…” But I did it anyway. Because I do not want my children to get a horrible disease, and possibly die. Because life with autism is hard, but it is not actually worse than death.

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